Cannot belive it has been almost 4 years since I last put my fingers on my instruments... I miss playing so much! The things we take for granted...

I want to remove plastics from my life, I keep drinking water from plastic bottles and containers. Can anyone recommend a good water filter and/or storage space for water that is easy to handle beside the bed. Glass jugs are little heavy for me.

"Vielleicht die einzige Krankheit, bei der Sport eine signifikante Verschlechterung verursacht." Von einem Arzt/einer Ärztin mit #MECFS aus einem Reddit-Forum.

We are long way from jazz in this small video- it is a piece from 18th century French Baroque. But go ahead, learn to play what you love, life is to short.

My family: “You have to fight” Long Covid:

After 4 years of pacing and trying to be under my energy limit, I have come to the conclusion that pacing is an utopia. We don’t have any reliable marker of what is too much. And the body is constantly compensating, digging an ever bigger hole in your metabolic health. Heart

Gestern starb Diewertje (32, NL) an schwerstem #MECFS. Seit dem Video von @DrHegedues ist sie mindestens die 6. Verstorbene: Samuel, Marc, Laura, Dennis, Celine, Diewertje. Während damals Außenstehende lautstark über #MECFS urteilten - wo sind sie, wenn Erkrankte sterben?

Pick your choice and there you have it

This one is for the annoying nervous system work crowd. 6 months of meditations, yoga nidras, rests and similar stuff. My stress levels were lower than my healthy self before for months. Guess how much I improved in that time!

Almost 4 years of severe/very severe long covid. 4 years of doing nothing and “resting”, waiting for pacing to work for me while I deteriorate further and further. I am sick of resting, pacing and this life. I cannot rest anymore, what is the point? I keep this broken body alive

People are reporting losing vision from Long Covid. Would love to hear any such case with MECFS.

Montelukast- pros and cons. I was prescribed this for my high leukotriene in blood. If you have taken it what was your experience, did it help and did you notice any side effects. #pwME #mecfs #LongCovid #mcas

I had a discussion with someone a while ago about the logic of building up new mitochondria in MECFS and Long Covid. They argued if someone is able to exercise below their energy limit, they would be able to build new healthy mitochondria. That goes against the studies that

Mecfs and Long Covid activists- if you have Dysautonomia/Pots you have EDS. You just don’t know it. My WGS connective tissue screen: P.S. I am not hypermobile either. Loss of collagen is either metabolic or immune function disaster.

@Hopeless0808 @DrHegedues Ja genau, wie so gibt es hier so viele “Aktivisten” welche Hern Dr. beschimpfen? Sie haben alle so ein wundervoller Leben mit so einem sekundären Krankheitsgewinn-was machen sie bloß hier, statt ins Restaurants und auf Flugreisen zu gehen? Weil ja, warum soll ich arbeiten, mich

I AM AT THE END OF MY ROPE. I'M NOW FLAT OUT BEGGING YOU: pls buy something from my art site ( https://t.co/0Vpg3mCwLu) or my eBay / Poshmark (linktree⬇️) as an early holiday gift / for yourself. I have stuff for Men, Women, Children, Pets & Home. https://t.co/KULjP4MpVh #pwME

I am tired of reading hypotesis and theories. So many different findings coming out daily… And no therapies still on a horizon…The tome is running out for many of us

Kommischerweiße rege ich mich wegen DGN Statement nicht wirklich auf. Es ist ja schon zu erwarten dass die Neurologen biochemische Prozessen im Körper nicht verstehen. Und genau bei diesen Prozessen sollen wir nach Antworten suchen. Leider ignoriert DGN auch zahlreiche Studien

In Dez 2012 I took multiple vaccines before our trip to Asia. I remember getting sick during our stay in Thailand. Since then doctors convinced me to get some more, Influenza, Hepatitis, etc… I have had 10 vaxx in this time, more than my whole life, more than as a child! That is